Maya Still Has Neuroblastoma — But She’s Stable Enough for Us to Fight to Bring Her Home

5th March 2026 00:16

Dear Research Team,

I hope you’re all well.

I’m writing to ask, as gently and realistically as possible, whether there is any indication that Maya may be able to come home by the end of March — ideally by 30th March at the latest. I completely understand that discharge decisions are complex and must be based purely on Maya’s clinical needs. We are so grateful for everything you’ve done and continue to do for her.

We never anticipated that we would still be in hospital nearly five months on (it will be five months on 28th March). While our focus has always been Maya’s recovery, the length of admission has had a significant impact on our family’s finances. I am currently on sick leave, and whether I am able to return to work on 1st April will make a substantial difference to our stability over the coming months.

Our mortgage is due for renewal by July, and maintaining a consistent income is crucial so that we are not viewed as financially unstable. If I remain on Statutory Sick Pay for April, it will place us in a very difficult position at a time when we are already trying to adapt to caring for a now-disabled child and managing the practical changes that brings.

We are hopeful that Maya will be assessed by Social Services for Disabled Children and considered for Continuing Healthcare (CHC). If she is deemed eligible, access to a funded PA/carer would make a safe discharge home much more feasible and would allow us to balance Maya’s care with work commitments. Our understanding is that a referral has been made (or is in progress) by our Social Worker Sajad Ali (Young Lives Vs Cancer).

I know Tadworth is anticipated for early May, and we are fully committed to that plan. However, if there is any realistic possibility that Maya could be discharged home by 30th March — even with robust community support in place — it would allow me to return to work for April and prevent our situation from becoming even more precarious. We have already exhausted monies that we have access to, reached the limits of credit cards and loans, and sought help from several charities, friends, and family. We are doing everything we can to hold things together, but I am deeply worried about the risk of losing our home if we cannot stabilise our income soon.

Terry is trying so hard to hold everything together at home. Under normal circumstances, Terry has always been Maya’s full-time carer during previous cancer treatments and clinical trials since April 2017 — when Maya was still physically able and running around. Terry has carried that role so well in the past. But this situation is very different. The physical and emotional demands of caring for Maya now, alongside the financial strain and prolonged uncertainty, are taking seriously heavy toll. To ask Terry to simply swap places with me at this stage would highly likely break him down. I am genuinely concerned that we could end up with two unwell family members — Maya, and Terry’s mental health suffering significantly under the weight of it all. At least with paid PA/carers at home, alongside support from our parents, Maya’s siblings that live 15 minutes away by car (they can see her after work), Maya’s Home Ed Teacher Sue Carter (Sue comes Monday-Friday to our home from 10am-4pm for academic tuition and as Maya’s wellbeing mentor), SALT specialist Sarah Covatti (she is great!), and the wonderful community nursing team (and hopefully PT/OT team), that month of April would give us all the chance to share the burden of caring for Maya more sustainably, without the very real fear of our family facing homelessness.

Please know this email is not about placing pressure on clinical decisions. We understand the seriousness of Maya’s situation and that safety must always come first. We are simply trying to plan responsibly and avoid further long-term consequences for our family.

If it would help to discuss this in person, I am very happy to do so.

With thanks and appreciation,

Dellanie

P.s. I am sending this email after the long discussion with the family.

5th March 2026 8:08AM

Katie from Maya’s Research Team got back to me — two main things really: they can refer Terry for psychology support if he wants it, and they’ve asked Sajad (our Young Lives vs Cancer social worker) to look into possible financial help with train fares/travel costs. They’re also meeting to discuss a longer-term plan for Maya. (This happened on 12th March).

10th March 2026 7:55PM

Dear Research Team,

Thank you for your reply and for acknowledging what I shared. It does mean a lot to feel heard. 

I appreciate you raising this at your MDT this Thursday and for linking in with our (Young Lives Vs Cancer) Social Worker Sajad regarding possible financial support. I know everyone is trying to help within the limits of what’s available.

If I’m completely honest, we have found it incredibly difficult to access meaningful financial support so far, and have largely been relying on the goodwill of friends and family to help us through. We even struggled to find support for the additional train fares for Terry to visit and support Maya during the week, let alone assistance with the much larger ongoing commitments such as our mortgage and household bills. Those fixed costs don’t pause because we are in hospital, and that is the part that feels relentless. 

In terms of psychology support for Terry — we really and truly appreciate the offer. Thank you for offering to make the referral. The reality is that Terry’s distress is not rooted in something that talking alone can ease. His anxiety is directly tied to the very real, practical current pressures we are under: the financial strain, the uncertainty (will we end up being homeless and rent a caravan place in Hythe/Dymchurch?), and the life-changing impact of Maya’s condition. Unless counselling can reduce those burdens or somehow give us back the life we had — with Maya miraculously walking and running around again — it’s difficult for Terry to see how talking to a psychologist or counsellor would help. His worry feels “situational”, not abstract. At the moment, while I am full-time with Maya at GOSH, Terry is keeping things going at home. He has been helping elderly people in the community with small handyman jobs, which at least helps contribute towards a fraction of our utility bills and takes his mind off the worries about Maya now being “disabled”.

After nine years of battling neuroblastoma, we are pragmatic when it comes to medical outcomes. We understand risk. We understand that cancer treatment is never without consequence. But signing consent for a treatment that ultimately resulted in Maya’s severe disability is something Terry is carrying very heavily. The responsibility of that decision weighs on him every day. I think what is crippling him most is the idea of stepping into full-time care in these circumstances (Maya with motor paralysis)— looking into Maya’s eyes and feeling a sense of guilt that is almost unbearable.  I am hopeful this motor paralysis is only temporary but you know yourselves that nobody has a crystal ball to predict, not even the consultants themselves.

As you may have gathered from the previous face-to-face meeting with Terry and my mother-in-law Dora, Terry isn’t really someone who finds it easy to sit down and talk with a psychologist or counsellor. He tends to cope better by keeping himself busy and focusing on practical things around the house. For him, using his hands to make improvements and keep the household going feels like the most helpful way of managing everything that’s happening.

At the same time, Terry has been keeping himself busy preparing the house so that it will be safer and more comfortable for Maya if she is able to come home. He is currently putting laminated flooring in the lounge to help reduce the cold draught from the old wooden floors, as this space will temporarily become Maya’s bedroom. These are all additional and unexpected costs.

Terry is also planning to remove the large bath in our family bathroom and convert it into a wet room so that Maya can eventually have a proper shower (on a bath wheelchair) rather than relying on bed baths. This was discussed with our local OT Emily. Keeping busy with these practical preparations helps Terry psychologically, as it gives him a sense that he is doing something positive for Maya’s safety and comfort at home.

When Maya is able to do more for herself and regain some independence, I truly believe Terry could resume being her full-time happy carer as he has so beautifully done in the past. But right now, the emotional weight of it all is immense.

That’s not to dismiss the value of psychological support — this is just to explain where he is emotionally. At the moment, what would help us most is some clarity, a plan, and a bit of stability, as well as a sense that we can spend some time together as a family before the next stage of Maya’s care at Tadworth. It would also mean that I could avoid being limited to Statutory Sick Pay (SSP), which would otherwise make it very difficult for us to manage renewing our mortgage.

Looking ahead from May to July, and possibly beyond, it feels like we are facing at least another three months of living separate lives. For nearly five months now, it feels as though we have suddenly become single parents in two different places. I have barely spent time with my husband, nor seen my other daughter, Lola (she is 17), during this time, and I also worry about the impact all of this is having on her as well.

Thank you again for taking this seriously and for discussing it as a team this week. We truly are grateful for the care Maya is receiving. We are just trying to navigate the wider impact of everything that has happened.

If Maya were able to come home before, or by the end of March, it would at least give us a month to reset, decompress, and regroup as a family. I hope that with everyone’s support across the team, it might be possible to bring the necessary pieces together to make this happen. 

With thanks,

Dellanie

P.s. 1.) May I also please ask whether our local team, who have been caring for Maya since she was three years old, will be part of the meeting discussions? If possible, it would be really helpful for Dr Jill Urand and Suzie Jamieson to be included, as they know Maya very well and have been closely involved in her care over the years. 2.) I hope and pray that my emails are being shared with the wider team involved in Maya’s care. I’ve written at length to try to fully explain how we are feeling and the challenges we are facing.

Firstly, I want to apologise for the delayed update.

There has been so much happening behind the scenes over the last 4 weeks, and it has honestly taken a huge amount of chasing, formal emails, pushing departments, and trying to get multiple teams moving at the same time.

I know the above email threads I’ve shared are long, but I felt it was important to show you all what has really been happening behind the scenes — especially now that Maya is finally improving and becoming more stable. Neuroblastoma is at the moment stable. But for how long, nobody knows.

After I formally emailed the Research Team on 5th March, and after further follow-up, the wider MDT (multi-disciplinary team) meeting finally took place on Thursday 12th March.

The short version…

Maya is currently planned to be discharged home on Monday 30th March — FINALLY!!! 🎉🏡

Those words feel surreal to even type.

If all goes to plan, it would give us one precious day to get Maya settled at home, and I would then return to work on Wednesday 1st April, all being well.

But as anyone who has followed Maya’s journey knows… nothing has ever been simple.

We are now in that final stretch where everything depends on equipment, services, and care support being lined up in time.

And sadly, some of those things have only started moving because I have had to keep pushing.

⸻

What still needs to happen before Maya can safely come home

1) Air mattress – sorted ✅

Maya’s air mattress was delivered to our home on Monday 16th March.

A huge thank you to the Kent Community Nursing Team for making that happen.

⸻

2) Essential equipment – in progress 🛏️

A profiling bed, hoist, sling, and slide sheet have already been requested by Kent Community OT.

These are all crucial to safely care for Maya at home now, given how much her physical needs have changed.

⸻

3) Wheelchair – our biggest concern right now ♿⚠️

This has been one of the most frustrating and worrying parts of discharge planning.

Kent & Medway Wheelchair Services have been incredibly slow, and they have only arranged Maya for a virtual assessment for next week (week commencing 23rd March).

Realistically, that leaves very little chance of a personalised wheelchair being provided before discharge.

This is not a small issue.

Maya urgently needs a tilt-in-space wheelchair because she currently has no trunk control (yet). She needs the right support and positioning to keep her safe and comfortable.

At the moment, a few options that have been explored seemed “no-go”:

• GOSH does not authorise Maya to temporarily loan the wheelchair she is currently using in hospital, as it is almost perfect for her size

• We may need to rent a wheelchair from the British Red Cross if they have a tilt-in space wheelchair in stock?

• GOSH liaised with Newlife Charity to see if a suitable loan chair can be arranged. But “the computer says no”.

We are seriously concerned that delayed wheelchair provision could actually delay Maya’s discharge!

⸻

4) NHS care package / support at home – urgently needed 🏠⚠️

Maya’s care needs are now 24/7.

Because of that, she should be eligible for an NHS care package / continuing support, but the local authority still needs to assess her urgently so we can hopefully get the right support in place.

That could include:

• paid carers during the day

• overnight respite support

• help to safely manage Maya’s needs at home

I have also been chasing hard for this to be fast-tracked, because without proper support in place, discharge home becomes even harder. Fortunately, our Young Lives Vs Cancer Social Worker has been chasing this to be fast-tracked on our behalf.

⸻

We need help from our support network:

This is where I’m asking for practical help.

If anyone reading this has any contacts, advice, or knows how to help speed things up, we urgently need support with:

• Kent & Medway Wheelchair Services to secure a tilt-in-space wheelchair

• Social Services / Disabled Children’s Services in Kent to help fast-track Maya’s NHS care package / home support

These delays aren’t just admin problems.

They directly affect whether Maya can come home safely and on time.

⸻

As things stand…

The plan is still for me to return to work on 1st April.

If anything is delayed, or if Maya becomes unwell again, then Terry will take over from me.

As always, with Maya, we are hopeful — but we have learned never to count our chickens too soon.

⸻

Thank you for standing with us 🫶

I also just want to say how deeply grateful we are for every single person who has supported us.

Your messages, your prayers, your donations, your kindness, your shares, your encouragement… all of it has carried us through the darkest times.

Life has been turned upside down for us for years now, and we truly could not have got through it without all of you.

We are so close now.

Please keep praying, keep sharing, and keep hoping with us that this final stretch gets Maya safely home — where she belongs. 🏡✨

A gentle little request from everyone who loves Maya 💛

Firstly, thank you — truly. Every gift, surprise and thoughtful little thing sent to cheer Maya up has meant the world to us.

But as we start the huge task of emptying Lion Ward Cubicle 9… I’ve had to laugh because at this rate we’re genuinely going to need a man and a van just to move it all 😅

So as much as gifts are so appreciated, what would actually help Maya most right now is something a little different:

✨ A few pennies towards her fund (she loves Bubble Tea (I spent £5.40 everyday! ), Pizza Express, GBK or McDonalds.

✨ Gift cards (Primark, TK Maxx, Amazon)

✨ Cash towards WAV taxis so Maya can get out to places (WAV- Wheelchair Accessible Vehicle)

✨ Deliveroo / Just Eat gift cards

When so much of childhood has been stolen by cancer, even small choices — what snack, what treat, where to go, what feels right that day — mean everything.

As a little aside, we’ve also had to turn our lounge into Maya’s bedroom, so any donations will also help us renovate and make that space right for her.

Thank you for loving our girl so fiercely. Your kindness carries us more than you know 🎗️

Thank you.

Thank you.

Thank you.

#TeamMaya #BringMayaHome #MayaStrong #NeuroblastomaWarrior #HopeForMaya #OneStepCloser